The Fabry Registry

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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If you have Fabry disease, you should consider joining the Fabry Registry. Among other benefits, the information you can provide may help scientists develop new treatments for the genetic disorder.

About the Fabry Registry

The Fabry Registry is the largest international patient registry database dedicated to Fabry disease. A group of physicians with extensive experience in managing patients with the disease oversee the database and lead its efforts. Sanofi Genzyme sponsors and maintains it.

One of the registry’s main goals is to better understand the variability and progression of Fabry disease, both within the patient population as a whole and among women specifically. The other primary goal is to monitor the long-term effects of the treatment Fabrazyme, an approved enzyme replacement therapy developed by Sanofi.

Participation is voluntary and participants may be contacted for follow-up. You can choose to receive information about research studies and upcoming trials that are relevant to you. You may opt-in or opt-out of the registry at any time.

The registry’s database also helps increase the understanding of Fabry disease by encouraging doctors to collaborate and share information and expertise.

How do I participate?

Only your doctor can enroll you in the Fabry Registry. If you would like to participate, your doctor will have you sign a release, which allows him or her to share your medical information —usually including medical history and disease progression — with the registry.

The Fabry Registry has a recommended schedule of assessments, which are medical tests that will provide information that the registry would like to have to compare with other patients. Depending on your age, gender, and stage of disease progression, the tests and schedule will be different. Again, you do not submit this information; your physician must do so.

Possible uses of database information

The database can be used to inform treatment schedules for Fabrazyme and other treatments. Physicians also can analyze the data contained in the registry to help them develop their recommendations for treating Fabry disease patients.

 

Last updated: July 14, 2020

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